Getting Back to the Future: My First Decade of Living with Parkinson’s Disease (part one)

Apr 1, 2021 | Blog, The Lived Experience

Life on the Couch: Diagnosis to Despair

By Guest Editor: Larry Linton


I have always liked Michael J. Fox.

On my first trip to the United States, after seeing him in “Back to the Future”, I was determined to find those same red striped, white leather Nike sneakers, as well as a pair Original 501 Levi’s that his character, Marty McFly, wore in the movie. I returned to South Africa successful on that shopping spree.

Then, as a young student of law at the University of the Witwatersrand, I tried to adopt the same preppy look of his character Alex P. Keaton on “Family Ties” – right down to the same tan leather executive briefcase. Years later, when he announced that he had Parkinson’s disease, I was sad for him. Little did I know at the time that I would have something more in common with him besides sneakers, jeans, and a briefcase!

My life changed when I was diagnosed with PD at the age of 49.

At the time, I had an uneven gait, with a dragging right leg. It felt like my right leg was not in synch with the left and had simply stopped working — I didn’t have a natural heel-to-toe movement, it was more like a “slap.” Having enjoyed recreational running for years before then, I thought I could run it off. Well, that didn’t last very long — I sounded like a galloping mule, with a limp! Then, I became aware of a constant resting tremor in my right hand.

At home or in the office, I would try and disguise it by holding my arms, sitting on my hand, or clasping my hands together.

In a way, the diagnosis brought a sense of relief — I finally knew what I had. But it was a difficult time. For most of the first two years following my diagnosis, I became a recluse. Always the life and soul of a party, I couldn’t leave the house. When I did make it out the front door, my anxiety increased dramatically, and I was frequently overcome with panic attacks. I couldn’t wait to get back to my house and onto my couch; the couch became my comfort zone. When I did make it into the office, I pretended I was really busy and buried myself in file work, in my office. I didn’t engage with my staff and declined client meetings and team events.

Everyone told me that me that Parkinson’s was not terminal, but in my mind, my life was over.

Parkinson’s had taken control and it was consuming me. I was a 50-year-old, with an old person’s disease. The lowest point I reached was when I was alone in the house, on a Saturday night. My family had left me alone, again. Even our pet dog, Becky, no longer jumped onto the couch to be with me. After two years, all that pent up anger and denial came gushing out of me like a tsunami. I wailed like a baby. The more I thought about myself, the more I cried. The more I thought about my family, the more I cried.

Then, after literally exhausting myself, I felt my breathing calm and my tears dry. A sense of utmost calm and peace rushed through me. I had clarity of thought. I had reached the point of acceptance. I knew I had to make a change. I still had a life to live. I still had a good job. I was still a father, a spouse, and a friend. I had to change the way I was living.

I had to get off the couch. I did. Things could only go up from here, and they did!

For Part Two of this story, check the accompanying post. Or listen to Larry discuss his experience here.